About Me and The Story So Far

Our Story Where We Travelled Together

"In fearful day, in raging night, With strong hearts full, our souls ignite, When all seems lost in the War of Light, Look to the stars, for hope burns bright!"

us standing together colour swapped with red and blue touches in front of a beach
When I met my husband he presented me with medical research on his condition after getting to know each other.  He wanted full disclosure going forward.  While FSHD muscular dystrophy is degenerative so much about it was unknown at the time.  It took a bank owner to get diagnosed with it to set up and fund significant research to even find out what caused the disease.  They have no cure, still no suitable treatment.  The condition at the time did not sway me.  I knew it would be tough going but I saw a man who was a brightly burning star and fell in love with him.  What broke us was not his disability but the unexpected disease that made me disabled.

After a bad bout of multiple weeks with what we thought was a bug I was severely ill.  Suffering multiple & even daily migraines, nausea, dizzyness, burning joint pain, terribly painful gut issues IBS, changing & new allergies, and fatigue like someone would shut down parts or all of my brain.  It would get so bad I would often lose control of my hands, or have extreme breathing issues at night & sleep paralysis.  It scared me.  I was acting as primary carer for my husband while working in engineering but I was losing fast.  No matter the diets, the therapies, the exercise changes I could not shake it.  It was getting worse.  I would no longer be able to focus easily at all.  Yet even though it was often debilitating we were getting passed from GP to GP with medical records and notes inexplicably disappearing & not being available.  No GP knew what it could be, they made referrals that would often disappear or with waits of years for an appointment.

After a few years I lost it.  I could no longer stay working, in fact it was getting very hard to hold on to the slim thread of stubbornness to remain.  I never made it to the last days of my given notice.  I ended up in hospital.  In a department where all they would do is trap groups of unwell people in a room, and prescribe them heavy medication with terrible side effects.  All with nothing to do inside except considering suicide.  I remember speaking to a therapist who worked as a doctor in the department.  When he saw how patients were treated he quit.  When he faltered and became a patient himself he was appalled how bad it got with a view from the end of a patient.  It took a few years to be diagnosed with severe myalgic encephalomyelitis, ME, (also known as chronic fatigue syndrome), a chronic condition also with no direct treatment or cure.  The clinical primer page 8-11 details the symptoms I often experience.  Medical tests back this up especially the strong shift in allergies, chronic sinus & lung infections, immune system dysfunctions, fevers, orthostatic issues, neurological issues, bowel and gut issues etc.  The difficulty being it affects a wide spectrum of bodily functions, (it is not just mental fatigue & headaches), in fact often the gut & allergy issues often dominate (and affects me more as I am used to migraines & pain management), which lead to emergency hospital visits in cases of anaphylaxis.

ruby and sapphire dancing in joy from 'Steven Universe'

My husband and I share a metaphor.  Our rings are a sapphire and a ruby, sharing chemical properties but with different arrangements.  Yet there is a different reason we also chose them.  We are big geeks & love comics as well.  He would call me a blue lantern of hope, (from DC Green Lantern series) and we would joke with his grumpy moments and anger he was a red lantern of anger.  Matched to balance each other.  It helped as in those few years we were robbed twice, had our car crushed by a truck in an accident, we had to give up our chooks, we lost our fence to development, I was sexually assaulted.  Then we lost our home in those final moments when we realised with his falls he could no longer stay without a wheelchair and we could not afford the tens in thousands of dollars to get his wheelchair inside our home.  We came to a point we could not afford our home any more either.

I moved us out, and while we can not find an accessible rental anywhere I strive & look for hope.  We plan to forge ahead.  Even when our new basement bunking flooded multiple times a year.  We are there working the clean up through pain and disability.  Last year my husband had a really bad fall with a serious brain injury.  He would be out of work for over a year and I would deteriorate to the point even a simple appointment, meal with family or shopping trip would make me fatigued, unwell, seasick, and even many days I would not even be able to manage that.  Not even manage sitting up. (Like the movie Unrest).  We still do a lot of sensory modulation to deal with the pain & nausea.  While we hope I can recover more I am not stressed by it.  With a diagnosis it offers a chance to research more, to strive for our future.  Plus I have a cuddle cat who often was a touch stone at bad times. 

This is our status now, both diagnosed, both disabled, looking to a future with no income support, no home access support, without a home we could bring a wheelchair into, but surviving.  Even planning for a home we could live in.  With good humour & a smile when we can.  Two lanterns burning bright in the darkness, supporting and balancing each other.